Ulcerative Colitis Tips


The FREE iHaveUC eBook "Ulcerative Colitis Tips" is made available to all members of the 15,000 person newsletter group INSTANTLY. It is several pages of tips gathered from other people living with Ulcerative Colitis, and has ideas which can be put into action immediately. You will need to enter your email, and confirm the email address afterwards.

Bone and Joint Pain – Suddenly Hurts So Much – What do you Do?

Joan H 300Hi All,

This is Hope and I’ve written before. I have 4 children (16, 18, 20 and 22 years old) and have been married for 25 years now in December. I’ve worked as a registered nurse for the past 25 years, and now have a job as an RN in Quality Assurance and Education of new staff to my agency.

Some more about me:

Most people would see me as friendly, positive and hard working. No one would have guessed the amount of pain I was in from UC over the years, and how it controlled my life and I worked my life around UC til I no longer could. It became disabling, and my ability to exercise, go out with groups, eat out, sit through a whole movie or plan family outings became impossible. When UC started to threaten my job because the pain was so bad I could no longer get through the day and was considering disability, I felt like UC had completely taken over my life.

Symptoms:

I have had amazing results treating UC since starting Renew Life Probiotics (ranging between 30 billion and 50 billion count) and I want to thank everyone for their advice and support along the way. I can’t say enough about repopulating your gut with healthy microbes! It has been the key for me at this point. I have not had any bleeding for three solid months – those results occurred within days of starting Renew Life (linked through this web site to Amazon). The pain I was living with was constant. I occasionally have pain now but it’s rare and usually associated with trying to eat a food that bothers me. I was taking 20 pills a day ranging from lialda, prednisone, nexium, dicyclomine, lomotil and tylenol for pain (which didn’t work, but motrin caused GI bleeds). Also suppositories and enemas daily. I’m now taking only 1 lialda in the morning, one in the evening and a nexium. So this has been a huge difference for me.

Bone and Joint Pain – Suddenly Hurts So Much – What do you Do?

UC has definitely changed my life. I have had it since I was a kid with terrible gut pain since I can remember, never knowing it was Ulcerative Colitis and not being diagnosed til my brother died of colon cancer in 1997 and I had a colonoscopy following that. I have always had what was called “mild” or “moderate” UC by colonoscopy – I’m like “If this is moderate, I don’t want to know what severe means”, and feel so badly for people with symptoms worse than mine. I’ve had more blood work than I can remember, CAT Scans, MRI’s Upper GI series and EGD’s.

Over the last three years the symptoms became almost unmanageable. I have a fantastic, thorough, caring GI doctor who works well with me. She has been sensitive to my ideas and questions, offered research to me, ideas and has spent many a visit sitting down face to face with me and just “figuring things out” together. She’s been judicious in th e use of medicine and has been careful to see what my other doctors recommend too. My family has been very caring and understand that I can’t do what I want to, especially in a flare (which is a misnomer – flares are more like an out of control forest fire that I never know when they will go out once they start!) They expect me to cancel things last minute now, which has it’s positives and negatives – at least they know I’m sick and understand when I cancel, but I wish I didn’t have to cancel so many things. It’s isolating. With the decreased pain, I’ve been able to add more things though, which is good. The thing that has started to develop now that the gut pain is under better control is bone and joint pain. That has been surprising and discouraging. I had thought I would be able to exercise a little more – I was lucky to go out on walks this summer – but now my left shoulder and elbow hurt so much I can’t lift a tea cup, my finger and to e joints hurt constantly and my right knee is so bad I can’t kneel down to pick something up. My spine as well.

Questions:

What do you do for joint pain?

I want to exercise. I had been using an elliptical 3 times a week for 30 minutes at a time, taking walks with the kids and my husband. Now walking around the block hurts and this is new in the last three to four months. I have osteoporosis – one doctor thought I must have been anorexic at one point in the past my bones were so bad on my DEXA scan when I was 40 they said I had bones like a 90 year old! I told him I had never been anorexic. Now through the GI doc I found UC can do that since you’re not absorbing the nutrients you take in. Over the years that adds up to pourous bones. Osteoporosis is not supposed to be painful though. Does anyone have deep bone and joint pain, even when the GI symptoms settle down a bit? And what do you do to help that so you can exercise again? Or bend, or walk, etc…Thanks for all your help everyone! And let’s keep supporting and helping each other! Thank you, Adam, for this site – such a help to so many people.

written by Joan

submitted in the colitis venting area

related posts (Joint Pain Survey) :  http://www.ihaveuc.com/99-person-colitis-joint-pains-survey/




38 Responses to Bone and Joint Pain – Suddenly Hurts So Much – What do you Do?

  1. Adam
    Adam October 16, 2013 at 5:57 am #

    Hi Joan,

    I’m super happy that you have found some lasting relief with the probiotics!! (BIG THANKS TO BEV for being the probiotics Champion of the site too)

    I’m super bummed though that you’re dealing with joint pains right now. Since its somewhat new, it probably seems like a total shock. But you’ve got to realize that you are for sure not even close to alone with those types of pains. Far too many of us have them as well or have experienced that in the past (including me for sure…) And it is awful. Maybe even worse than “UC” symptoms at times. There’s for sure a correlation between UC and these odd pains.

    When I have been in remission for many months (like currently) I’ve not noticed any signs of joint pains or tenderness in certain areas (like my collar bone region) which sometimes act up. But, I suspect that if I started to enter into some state of inflammation/flare territory…then the joint pains would potentially creep up again.

    I’m just speculating here, but maybe the prednisone was masking some of this while you were taking it, and maybe since coming off it, it is more noticable. (But that’s just a wild guess on my part).

    Either way, I suspect that on your road to recovery, you’ll soon be free of the joint pains as even more healing takes place.

    Best of luck Joan,
    -Adam

    • Joan H
      Joan October 16, 2013 at 2:00 pm #

      Adam, thank you so much for your advice and support. You’ve been a great resource to so many people – I can’t thank you enough. I have never seen a web site on UC that is so real and focuses so much on helping people with their symptoms, offering good advice and supporting them along the way – whether it’s all natural, naturals and meds , neither, oe having to go through surgery. Your approach is always positive, and honestly I had looked all over for help with UC when I found your web site. So thank you. Also Bev – yes, Bev and Sharon definitely got me started on the probiotics which made an immediate difference within days – it was amazing! So thank you to them and to everyone helping each other out. I’ve actually, since I wrote this last post, been decreased even further from my GI meds – not taking lialda AT ALL anymore, which is a big change. So primarily only taking probiotics and still seeing the benefits of them. Now that the GI pain is so much “almost completely gone”, my gut had been keeping me from excercising – hopefully the old bones will settle out and start behaving too! Thanks for everything – I appreciate it :)

      • Adam
        Adam October 16, 2013 at 3:25 pm #

        Rock on Joan!! cheers to continued success to you for years and years to come!

  2. barb October 16, 2013 at 9:20 am #

    Hi Joan,

    I soak in Epsom salt baths for my joint pain. I also started taking Schiff Vitamins about 2 weeks ago and starting to feel some relief. You may want to give these a try.

    So sorry to hear about your brother. I am 44 and have been battling UC for 15 years now. I still wonder how long I will be able to live with this but I keep my hear up and keep moving forward =) I refuse to let this get me down.

    Barb

    • Joan H
      Joan October 16, 2013 at 2:04 pm #

      Thank you, Barb. I appreciate your advice. I am just taking calcium and vitamin D twice a day now , and a multivitamin, along with the probiotics which made an amazing difference for me. Yes, my brother passed away when he was 43 years old after battling crohns disease for 23 years. he developed colon cancer. It was very tough. That’s when the nurses at the hospital he was in told me that I should start screening with colonoscopies too, so that’s when I found out I had UC. My father also had UC, but I guess I was thinking “not me” for many years (denial). Anyway, thanks for your advice and your caring words. i hope you’re doing well – keep hanging int here – we’re all in this together!

  3. AJF October 16, 2013 at 10:53 am #

    Hi Joan,
    All of a sudden my elbow became so painful, I too, could not lift a teacup. In fact, I still can’t. The pain is constant but seems to get worse every few days. On those days I rub Aspercream on and the pain is tolerable. Other than that, I just live with it. It seems this is very common among UCers. Check out the results of the joint pain survey on this website. There’s a lot of comments about what people do to help them along.
    Good luck and best of health.
    AJ

    • Joan H
      Joan October 16, 2013 at 2:09 pm #

      Thank you AJ – I thought I had to be crazy thinking I couldn’t lift a tea cup! But it was , and is, true. The joint pain is everywhere now, it’s gotten even worse over the last two weeks or so, so the dr is going to draw a set of bloods to see if I have anything going on, including lyme disease and a GGT test that tests for bone breakdown levels. My liver enzymes have been elevated too, so they’re going to follow up on that. Thanks for sharing your story about the joint pain and tea cup – til you have it, I think most people don’t understand it, or they think you’re exaggerating. So I appreciate hearing your story. I would like to try to get some exercise now that my gut pain is better, so this bone and joint pain has been discouraging, like “Where did THAT come from?!” Made me feel frustrated and down, but I’ll keep pressing on and thank you for your advice – all the best! Joan

  4. bev October 16, 2013 at 2:37 pm #

    Joan…I am thrilled to hear that the probiotics are helping you! That is great news.

    Don’t stop taking them. They saved me too! It’s amazing, really, how it took just a few days for them to work for me as well. I couldn’t believe it. 15 years on meds that never really helped, and all that while, I could have been taking probiotics instead….oh if only I’d known!

    I wish I could help with the joint pain. Like Adam, I haven’t had much since remission…however…are you also taking the L-glutamine? I think that it helped my body pain, because it helps repair muscles, as well as other body tissue, as well as healing the colon…just a thought! It is actually recommended if you are recovering from any surgeries, as well, so it is quite a powerful natural thing to take…

    Bev

    Bev

    • AJF October 16, 2013 at 3:56 pm #

      I, too, like Bev, actually because of Bev, am taking L- glutamine every day. My remission seems to be even better since I’ve been on it but haven’t really noticed a difference with the joint pain. Not yet, anyway. As far as exercise goes, I keep it to walking my dog but I have to hold her leash with my “good” arm because my left elbow can’t hold her. Maybe I’ll try a little jogging in the near future. Keep us posted on your progress and let us know what your tests find about your joint pain. All the best!
      AJ

      • bev October 16, 2013 at 5:54 pm #

        I think you have to take a higher dose of L-glutamine to actually feel or get pain relief…

      • Joan H
        Joan October 24, 2013 at 2:51 am #

        Thank you – I wonder whats up with left elbow pain, because a lot of us seem to have that or complain of that being where it started…

    • Joan H
      Joan October 16, 2013 at 7:46 pm #

      Thanks Bev, for all your help with the probiotics. They really changed everything in just days. And now I’m off almost all my GI meds. It’s amazing. And so many of the dr’s I’ve met don’t realize how the lower doses of over the counter probiotics just don’t do much – they usually recommend the align 1 billion count, but I’ve gone up to 30 billion a day with Renew Life. I started at 10 billion and within three days, the bleeding and horrible gut pain was essentially gone. I went up to 30 and now have basically no symptoms at all. The bone pain – I have tried the l glutamine but for me taking just one capful a day caused severe constipation, so…I didn’t want to start all that again (the balancing act between diarrhea and constipation, or the stomach/gut pain). Maybe I should try a half dose? Thanks for your help along the way, Bev – hope you’re doing well!

      • bev October 17, 2013 at 6:39 am #

        You could definitely try a half dose. Sure!

        I am doing excellent, Joan, thank you for the kind words!

        Stay well my friend :)

        • Joan H
          Joan October 24, 2013 at 2:51 am #

          :) I am glad you’re doing excellent! You’ve helped so many of us – best to you, Bev!

          • bev October 24, 2013 at 6:42 am #

            Thank you Joan.

            Right back at you!

            :)

  5. shelly in maine October 16, 2013 at 3:52 pm #

    Hi Hope,
    So sorry to hear about your increasing pain, but glad to hear your symptoms have leveled..how awesome!
    I still get lots of joint pain, but it is definitely peripheral with the UC. I as tested for arthritis, etc and nothing showed so i know for sure. Have you been testes for arthritis?
    I’m not sure what other anti inflammatories you are using like the vit d, fish oil, astaxanthan, etc? Those can only help. But i will say when I was flaring, nothing seemed to help with the joint pain and i could barely walk, etc….just time, but maybe the anti-inflammatories could help take the edge off?? Plus anti inflammatory foods? Natural ways to try and attack it. Do you have access to a pool? That would be great no weight bearing and with the UC leveled!
    Hang in here.
    Best, Shelly

    • shelly in maine October 16, 2013 at 3:53 pm #

      haha..hang in here and there and everywhere! :-)
      Typos always make us laugh! :-)

      • Joan H
        Joan H October 26, 2013 at 7:07 am #

        Hi Shelly :) I should have written earlier, my name is really Joan (not Hope). Here’s how clueless I was – I thought when I went on this web site I was supposed to pick a name to have as my posting name :) So, since I wanted so much to feel beeter and have my gut healed from UC, I picked “Hope” — because I do hope that someday for me and everyone else, we can overcome UC! So, now I think I’ve confused people! Maybe everyone realizes and now knows I’m Joan – but talk about funny! Two names for one person! Still, I do have hope and try to remain positive about overcoming the UC.
        The latest test, so far, says I have a steatorrheic liver, or a fatty liver (?). Even as an RN I don’t know much about that – except I DO know you only have ONE liver and you don’t want it to start malfunctioning! The Dr was talking about my own immune response attacking my liver cells vs having storages of high levels of fat IN my liver – I weigh all of 100 pounds, so it seems so unreal to me – and those fat deposits can cause your liver over time to stop functioning, stop detoxifying in your system the way the liver is supposed to, and stop producing blood clotting factors, as well as stopping the process of digestion. Not a good thing. I don’t know how that would happen to someone with as little body weight – I have never been more than 115 pounds at best. In any case, the DR wants me to start taking Vitamin E 400 IU a day to try to draw the fat out of my liver to help it function better. It’s all so odd, and just another complication of UC that I had never heard of – all related to autoimmune disease like UC and the body fighting itself in different ways. Maybe it’s part of the reason I have bone pain now too? I was so overwhelmed with the bad news that I forgot to ask her :( I am not happy with UC right now…

    • Joan H
      Joan October 24, 2013 at 2:55 am #

      Thank you Shelly – I haven’t tried the other things you mentioned yet, so thanks for the advice. I don’t have access to a pool right now but I’m thinking I could try the elliptical again but only for very short periods of time, like 5 minutes to start. It’s a little scary because of the pain – I don’t want it to increase, but I don’t want to totally lose exercise either…Thanks for helpng, Shelly – Great to hear from you :)

  6. pam in Quincy, Ma October 16, 2013 at 7:31 pm #

    I also have problem with joint pain, some days it’s in my knees some days it’s in my elbows and other days it my be in my shoulders. I can never tell where it will appear. I was told I had UC in June Of 2012 so I’m pretty new at this. I have not had a flare since Aug of 2012. I very glad with that but the joint pain is unbearable at times. I have found that walking everyday weather it hurts or not really helps with the knee and ankle pain but I have not figured out how to get rid of the pain everywhere else. I love reading the comments on this site I’m learning a lot about my UC. Thanks for an awesome site.

  7. Angela October 16, 2013 at 7:42 pm #

    Hi Joan,

    For some reason, UC can manifest itself as joint pain…unfortunate side effect. Despite remission I still get it in my elbows and knees (and I’m only 24!). My trick is a heating pad. Since it’s not an injury (you shouldn’t use heat on a injury, only ice) the heat actually seems to help the pain. And I make an effort of trying to move more when I have the pain. Be REALLY careful with anti-inflammatory drugs such as asprin, advil, or aleve (or their generics) as they all are really harsh on your colon and can make matters worse. Only take tylenol for pain (if you really have inflammation/arthritis you need to see a rheumatologist about it so it can be managed properly).

    Make sure you’re taking calcium and vitamin d supplements if you have osteoperosis. I hope you feel better!

    • Joan H
      Joan October 16, 2013 at 7:51 pm #

      Angela – Thank you for your advice. I had to stop aleve and advil three years ago because they caused a GI bleed. Tylenol just barely takes the edge off, and I am taking calcium and vitamin D every day which is good. I’ll try the heat – I hadn’t thought of it before because it seems so random – pain in my left elbow, right foot (both are pretty significant), spine pain, and lately even rib pain. The thing is, as my GI tract was getting better I was so looking forward to increasing my exercise, but haven’t been able to and actually felt I had to stop it. That’s good advice to keep active anyway. Thanks for the help! Joan

  8. Julia Metzler October 17, 2013 at 5:22 am #

    Dear Joan,

    When joint pain increased (knees, elbows, back ), my GI added sulfasalazine to my meds. It is used for ulcerative colitis and for rheumatoid arthritis as well.

    Af first, I was also taking Lialda, but eventually I stopped the Lialda (which made my hair fall out) and the dosage of sulfasalazine was increased. Some people get side effects from the sulfa component, but many do not. Increasing the dosage slowly can help avoid side effects. I also use retention enemas to help with the distal inflammation.

    I also began to follow the SCD diet, and believe this made a huge difference in the joint pain. It hasn’t helped with the colon yet, but the pain relief alone keeps me with the diet. My GI doesn’t believe that the diet has anything to to with the improvement, but I doubt he could make a case for eating sugar and refined starches!

  9. Mike from Ohio
    Mike H October 17, 2013 at 4:48 pm #

    Hi Joan,
    Last year at this time my joint pain started almost overnight and was intolerable to the point I needed help out of chairs and bed and lived on vicoden. It hit my knees, shoulders, elbows and wrists. It was only a month later that the UC flared up so bad I chose to have my colon removed at the Cleveland Clinic and I am now living a life with a J pouch and so far so good, I have my life back. The joint pain has not gone away but since the colon removal it has become tolerable and I can live again. The Gi’s, surgeons and rheumys are all very much in the dark when it comes to joint pain associated with UC, I have joint pain but no inflamation. Now that I am drug free and UC free I learn to deal with the joint pain. I use some aleve but only on my bad days and I suggest message therapy it does loosen things up. If it ever becomes intolerable again I will go see a pain management doctor only because I am not putting the prescribed poison in my body. Remicade was aweful as was every other arthritis drug they tried. Sorry I was not much help but wanted you to know that you are not alone.

    Mike

    • Joan H
      Joan October 17, 2013 at 8:00 pm #

      Thank you Mike. It really is a help to hear from people and their experiences, and it encourages me to hang on and hang in there. I thought about massage therapy but I wasn’t sure if that would irritate things more, so thank you for the suggestion, and it is good to know I’m not alone. You’re right – a lot of dr’s don’t see a connection between UC and joint/bone pain. And I get it – once the GI pain decreases, it does make sense the joint pain would be more bearable – at least it’s one thing at a time instead of both hitting so hard at once. Thanks for the words and advice – Hope things are going well for you with your J pouch. I’m glad you wrote!

  10. Sharon MacArthur October 23, 2013 at 12:10 pm #

    Hey Hope, so glad to see that at least the bleeding has stopped. I too have been in a bad flare but am finally back in remission. I tried Prednisone, L-glut, probiotics, and astaxanthin but nothing worked. I finally started the GAPS diet about 6 weeks ago and within 2 weeks I was so much better. Now, I am down to 10 mg of Prednisone and taking the probiotic. Since you are still struggling, it may be time to really consider the diet. I will say this has not been easy. It is a lot of work and takes a lot of planning but I am so glad I finally did it. I have to say, I wasn’t sure I could keep up with feeding my family and taking care of myself. Now I realize that if I don’t take care of myself, I can’t take care of them. I am still trying to rebuild my strength and tapering the pred but I am so much better that it is all worth it.

    • Joan H
      Joan October 24, 2013 at 2:57 am #

      I will look into the GAPS diet, Sharon. I need something other than rice and chicken bits :) I think you’re right – it’s time. Any suggested web sites or books? Thanks! Good hearing from you again :)

      • Sharon MacArthur October 24, 2013 at 4:06 am #

        I bought the Guts and Psychology Book on Amazon. It is based on the SCD diet but is primarily used these days for autism. I chose GAPS because I found so many additional resources and easy to follow plans. I felt like it was a very proactive way to eat instead of just restrictive. The absolute beat resource I have found is from the Health, Home, and Happiness website. Cara writes a lot of menu plans for grain free eating, including a 30 day guide of “What Can I Eat Now” for the 1st 30 days on GAPS. Honestly, you could skip the book and just use this menu guide and other info online. I will say, I did not ferment the fish or take cod liver oil but I followed it closely otherwise.

        • Joan H
          Joan H October 24, 2013 at 3:28 pm #

          Thanks Sharon. I am already looking into that – you give great advice – Thanks again! :)

          • Joan H
            Joan H October 24, 2013 at 3:30 pm #

            I mean, I’m looking into it because you recommended it! You have been a great help to me – this afternoon/evening I’m looking and researching – thanks again!

    • shelly in maine January 8, 2014 at 5:20 pm #

      Hi Sharon,
      Just wanted to say hi and see how you were doing with your regimen, etc.
      Hope you had a good holiday and happy healthy New Year!
      Best, Shelly

  11. shelly in maine January 8, 2014 at 5:17 pm #

    Hi Joan,
    Just wanted to say hello and check to see how you were doing? Open tngs are okay and you had a decent holiday.
    We made it through the frigid cold and ice storms through Christmas and New Years!
    Hope to hear from you.
    Happy and Healthy New Year!
    Best, Shelly

    • Joan H
      Joan H January 8, 2014 at 7:54 pm #

      Hi Shelly – Thanks for writing! I hope you’re doing well. I guess you really have had a big winter so far! It’s beautiful to see the snow, but unbelievable how much snow we’ve had! I’ve been doing better lately, thank you for checking :) The bone and joint pain are still there and they have made it really hard to exercise even now. But my colon is “behaving” and I am now only taking the 30 billion count Renew Life Probiotic, a nexium and an occasional hyoscyamine to slow motility when I need to. I can’t believe the difference the probiotics have made and I keep telling other people about them. For the joint pain, that’s about the same, but I tried to get on the elliptical last night for the first time in probably 9 months – at first it was the UC that kept me so debilitated I could no longer do it and was barely getting through the day. Then with the probiotocs and dietary changes the UC came under control over time and then the bone pain started. So I was able to do some very slow elliptical work for about 7 minutes – that was enough for a start for me. But I am really thankful for that and any small victory! I have not been able to get the joint pain under control so I thought I would just try to exercise through it. My diet has been very restricted due to the UC and multiple allergies, but I did try quinoa at the suggestion of an RD I met. I was amazingly able to tolerate it and have found that I can now start introducing some other foods back again without a full out GI flare. I was eating only chicken bits and white rice. I had a slice of pizza last week for the first time in a year, and while I know it’s not the most nutritious choice, I was amazed that I didn’t have a flare after it. I still haven’t been able to add much else in the way of diet because I still have life threatening allergies to all nuts – almonds, pecans, walnuts, peanuts, you name it and many, many other foods (apples, celery, carrots for example) but I would like to have help in the area of allergy and how to add food to my diet without having anaphylaxis and needing epi and the emergency room :) I haven’t found someone yet who knows that much about these allergies except a nutritionist who wanted me to start tube feeding….that’s another story. With the quinoa and other things I mentioned I’ve been able to maintain my weight so I’m thankful. Thanks for staying in touch – let me know how you’re doing when you can! Joan

      • shelly in maine January 9, 2014 at 6:15 pm #

        Hi Joan,
        Glad to hear of your small victories, but victoties none the less! :-) it is such a full time job being us! You, especially have all those extra challenges with the allergies. You have to be so careful. I wonder if finding more locally grown, hormone free, non-nut, etc environment would be helpful. So many things get cross contaminated now and many companies label, but still… I guess natural, local and non gmo is your best bet. I know up here it seems hard to find and growing seasons are short.
        I’m hanging in there still thanks. Most of the bleedng is gone recently. I’m just basically maintain my flare, but am staying functional. Guess that beats the alternative! I think it has been since June? With that whole sinus ear infection thing. But who knows. I took a small break from everything about a week and a half ago and going to figure out what I’ll do next. I tried the astaxanthin and I think it actually upset my system. But I’ll try again sometime. Gotta love it….as I always say…UC is not a one size its all rollercoaster! :-)
        Good luck with the foods and joint issues. How is your liver and other blood work?
        I’ll keep thinking positives and remember every little bit you do from vacuuming to the elliptical is progress. Baby steps! :-)
        Keep me/us posted. Best as always, Shelly

  12. Joan H
    Joan H January 9, 2014 at 9:25 pm #

    Hi Shelly,
    Thanks for keeping in touch! I’m sorry you’re still having to deal with the ear infection/sinus infection issues and all that brings to those of us with UC. It’s never really straight forward and easy for us, is it? Like you said, dealing with UC is not a one size fits all kind of thing. I hope you find more answers soon – it’s been a long time for you, since June…I’ll keep you in my prayers for an answer. I know how hard it is when symptoms keep hanging on. Maybe the astaxanthin dose you took was too much? I haven’t tried it, just read about it. I know it’s supposed to work as an anti-inflammatory. You know, sometimes anti-inflammatories aren’t that “friendly” to UCers. I have found that any anti-inflammatory, whether it’s a motrin/ibuprofen or something like a food product actually cause me to have bleeding rather than do what they are supposed to do and decrease bleeding and inflammation. I’m not sure why this is. But as I was reading what you wrote, I wondered if you have trouble with any of the other antiinflammories? Or maybe you need to start with a lesser dose? Would a simplified diet help for now? Some probiotics maybe, and start everything else on the slow side? Just thinking out loud here but that has been known to work for me. Also, talking with this RD recently and she was mentioning “leaky gut” syndrome and how quinoa can help with that as it can cause the protein leaks to be “patched up” and decrease the symptoms of leaky gut and allergies even. She recommended that I make some plain quinoa, put it in a blender, add rice milk and maybe some vanilla for flavoring and get my protein in a more digestible form (liquid) that way. The quinoa has made a big difference for me, so it’s worth a try. I like your idea about locally grown, no GMO’s and finding some allergy free alternatives that way — maybe being able to build up my diet. I’ll let you know how things are going, and please stay in touch and let me/us know how you are. It’s really good to know we’re not alone and we can help each other – All the best! Joan

    • shelly in maine January 10, 2014 at 5:58 pm #

      Hi Joan,
      Thanks for thinking out loud. It’s good to still hear what works for us long timers, even if it is a slight bit of help or neutral.
      I still do mostly SCD so I keep it pretty minimal. I have added in some gluten free,non gmo rice pasta On occasion. I did buy quinoa, but haven’t tried it as it is also not really a SCD food. I do vsl Rx strength, vit d, lovaza (fish oil), my mgic smooties…but just took a small break from smootie and e few days off vsl. Sometimes I feel like my body is fighting itself and the herbs, etc. I will add most back in and probably use some of my Chinese herbs before atemting the astaxathin. The L glut is also iffy with me as well. There is something similar in spirutein I put in my smoothie plus vitamins, etc. That usually helps and builds my system up.
      Oh be careful of carageenan in your rice milk…it is known to cause many problems especially for people like us.
      Thanks. TGIF! Best, Shelly

  13. shelly in maine January 10, 2014 at 6:03 pm #

    Haha…forgot how funny typos and auto spell check that doesn’t work is!! :-)
    Probably make a smootie!! Tomorrow and for real attempt the astaxanthin some other time!
    Happy weekend. :-)

  14. Krisy March 9, 2014 at 4:35 pm #

    Joan-
    Like the others, I enjoy reading your well written journey and trials. I had an ALCAT latent food allergy test run through my MD who is a cellular remedy advocate. It identified foods that my body won’t tolerate that I would never have uncovered. I incorporate the SCD diet and the ALCAT plan is completely tailored to your body. I still have the joint pain too, crave heat but it doesn’t alleviate the pain much. Exercise made me feel good for the time being, but then I couldn’t perform my job as I was too tired and had to go to bed. (Had to choose job – kids you know:) I also have a weird flare of acne like cysts that appears on my face, scalp and behind my ears when things are going to get bad. I’ve tried all the antibiotics and acne treatments for that, which cause a worse gut flare and worse joint pain.- Just wondering if you have any of that too? (traditional Doc’s suggest Humira to repress the immune system for each of these symptoms, but I don’t want to go that way. ) Thanks for letting my vent and be a voyeur to your joint pain thread. – Krisy

Leave a Reply